Because I'm no warrior!

Last July, half way through my course of chemotherapy, at a follow-up consultation, my haematologist-oncologist viewed the results of my CAT scan and grimly declared that it wasn’t good news. The tumours had not shrunk enough and he wanted to change my regime from R-Bendamustine to CHOP. I was devastated by this news.

R-Bendamustine is the standard first line of treatment for indolent (slow-growing) NHL (Non-Hodgkin Lymphoma). R stands for Rituximab and is an immunotherapy molecule, hyped as the latest breakthrough in cancer treatments, designed to work alongside the chemo. My body did not like Rituximab and responded dramatically whenever the IV was increased from anything other than a snail’s pace. As the Rituximab was the first to be administered it meant that on a couple of occasions the treatment was cancelled and I was sent home pumped up with anti-histamines and steroids. I also had two hospital stays, one for an infection and one for surgery on my lung which meant further delays and a ton of antibiotics all within a few months. I felt that the chemo regime had not been given a fair chance in the short period of time we were counting.

CHOP is a far more aggressive chemotherapy and is part of the R-CHOP regime normally given as a standard first line treatment for fast growing NHL tumours. The side effects are worse and it also guarantees hair loss, a side effect that troubles me enormously.

However, over the time that had passed since diagnosis, I had completed a lot of research around cancer and its treatments and had experienced many dark nights of the soul where I questioned myself, someone who I was starting to realise, I didn’t know as well as I thought. These were huge stakes at play here; what was important to me? What transpired was I was not prepared to lose my hair in the gamble. I felt then, and still do to a lesser extent, that I was being exceptionally shallow and a ridiculous coward but I kept returning to the same issue. Everywhere I looked, women were coping with their hair loss. It looked to me like a badge of courage that I would not earn. Maybe if I was younger, maybe if it really would do the trick, maybe I would consent to this and worse but at that moment, when the consultant asked me to sign the consent form; I drew my line in the sand. My wonderful husband and daughter were with me in the small room we were squeezed into along with the doctor, the nurses and a junior doctor. I felt stuck between a rock and a hard place and under pressure to sign but I declined. This was an exceptionally difficult action to take and I was immediately aware of the risks associated with my decision. You might like to imagine the consultant’s face.

You see, cancer just gets you in a tight grip around the neck, forces you against a hard unforgiving brick wall and lifts you up off your feet and SHOUTS at you right into your face, loud and aggressively. Initially, the diagnosis of cancer is like the despot school bully, it taunts and scares without mercy, finding all your weak and vulnerable places not least of all the fact of your mortality and reduced lifespan. No wonder the dominant metaphors in cancer narratives are war, fighting and survival; the bully needs to stand down and chemotherapy is the ammunition. And when the medical establishment offers a treatment in this unknown and frightening terrain it feels like the cavalry have arrived and this is a fight that is going to be won. However, as the medication I was enduring was failing to meet the surrogate marker of reduced tumour size, I started to feel less inclined to further any battles. Instead I wanted a more humane approach which might offer quality time at the expense of quantity and which allowed me to face the world with the necessary confidence.

There’s no value in getting bogged down with all the details here except to say that it took considerable negotiation on my part to establish an agreed treatment plan for the next three months. The plan was that I would simply have three more rounds of Bendamustine on its own and then we’d look at how I fared after the treatment ended. That was three months ago! Last Tuesday I had a CAT scan and yesterday I met with my haematologist to discuss the outcome.

However, before I share the outcomes, I have done more than just accept three more rounds of Bendamustine. I have been slowly putting together a bespoke ‘Healing Plan’ for myself which incorporates: diet, wholefood, more vegetables and no refined sugar; gentle exercise, aka rebounder, yoga, walking and dance; dietary supplements e.g. hemp oil, curcumin, the Budwig protocol; and a developing philosophy of life that is aligned to a deeper connection to my own existence. When I first was diagnosed with cancer I bypassed so much of what I have now started to treasure. At first I dismissed anything that was not standard medical procedure, labelling everything outside mainstream conventional thinking as ‘quackery’. Now, I explore EVERYTHING and ANYONE! It doesn’t mean I follow all or any of what I discover: I like to think I’m discerning as to what to include in my plan. And, although like everyone living with cancer, I hope for radical remission I am realistic enough to appreciate that much of my Healing Plan is designed to support my feeling of being in control and whether or not this is illusory doesn’t matter – I feel more optimistic and sense an increased vitality.

So yesterday, my beloved husband and daughter entered the consultant’s room with me; hoping for the best (obviously spontaneous remission) but prepared for the worst (tumours increased in size)… breath…

The tumours have reduced ‘a lot’.

Relief from scanxiety.

I have known from the outset that slow-growing NHL is incurable so what I seek is quality time in order to live as fully as possible (with my hair) for the remainder of my life. My life has started to become the greatest mystery to me and I feel very different now to the woman who was diagnosed at the end of last year. I sense that my body requires more rest and restoration if it’s to cope with the threats of the renegade cells that continue to exist so my aim is to support as best I can all the trillions of healthy cells that together make ‘me’. A cancer survivor till I die.

As each day goes by I am confronted by people dying from cancer and the sadness sometimes overwhelms me, seeing beautiful lives cut short, knowing that every day it could be me. I am grateful, very grateful for the time I have been offered.

My daughter made a request. She asked me to handwrite a series of letters that she could read on her birthdays after I have died. How could I possibly refuse? But it is more heart-breaking than I ever imagined. I’ve just completed the first letter. I purchased some stationery for the task. I didn’t think that letters as important and as significant as this should be written on the paper that I use for the printer. Instead I am writing on paper that has come from Smythson’s (Established 1887) in Bond Street London. It is form of communication that I have neglected since the birth of e-mail and texting, and I have forgotten the stops and starts and the need to keep my handwriting both legible and coherent.

I wept as I wrote because I began to imagine this world that I am in at the moment without me. I so want to share my daughters life. She has brought forward her wedding to October to ensure that I can attend but I fear that her wish to have children and for me to be around to see them might not be possible. It breaks my heart to think of the grief and pain that she will experience when I die.

It is strange to write in the present moment for an unknown time in the future. Will she be reading it next year or will it be in ten years time.? I don’t take anything for granted anymore. Life changes fast, it changes in an instant. I always thought, hoped, that I would die before my daughter and if things go to plan this will now definitely be the case but whereas previously it was all in the abstract – something to put off – it is now incredibly real and possibly quite close.

She wants a series of letters and intends to open them one at a time, one year after the next, on her birthday. I did suggest that she might be tempted to read them all, but she thinks that this would spoil it. I have got lovely pale cream paper and am writing with different coloured felt tip pens. I’ve stuck some pictures on it and drawn a red heart in the corner. At least they look cheerful.

So #1 completed, let’s hope that it’s not read in the too near future and then I can apply myself to write some more.

Jennifer Lash, otherwise known as Jini Fiennes, the mother of seven children including the actors Ralph and Joseph, was diagnosed with breast cancer in the late 1980s. She died December 1993 at the age of 55. Whilst in remission, she designed her own pilgrim route through France ending up at Spain’s sacred Santiago de Compostella. She wrote a book about this journey, her only non-fiction book; ‘On Pilgrimage’.

Initially I was somewhat disappointed because there was such little mention of her disease. She doesn’t make the connections between her illness and the journey clear and it’s difficult to establish what the pilgrimage meant to her in the light of this. However, reading between the lines of her descriptions of the places that she visits, her observations of the people around her and her growing personal insight, it is possible to grasp the essence of what she was seeking; a truth of sorts.

Jini was not religious although she was brought up catholic. This meant that although she was knowledgeable about catholic ritual, the places that she visited churned up mixed feelings about her lack of belief. She felt a bit of a fraud when mixing with other pilgrims, “all these varied boats of human vivid adventure bobbing about on this sea of certainty. Faith. Everyone assumed I was bobbing about on the sea with them.” The conviction that others held with regard to their Christianity highlighted her sense of emptiness. She notes; “the awful realisation of this derelict no man’s land between belief and non-belief.” She also found that “being with people whose lifestyle is a demonstration of their certainty and focus can be unnerving if you are unsure of yourself.”

This resonated with me. I am not religious but do waver between non-belief and the sense of something greater than we can comprehend. But I cannot shift the sense that this is all a random universe and find it difficult to understand how cancer can be viewed as positive in any way; that my life could be in any way better because of it. I also find it unnerving when people are able to be upbeat and positive about their outcomes, not allowing negative thoughts to foster doubt or uncertainty. Their energy and determination amazes me. I’m unable to be so sure. I fear that the chemotherapy offered may make my life worse. I do not have faith in the treatment.

But it is difficult to live with this uncertainty and doubt. I have to work at living whatever life I have left even with an incurable stage IV cancer hanging over me. Jeni seems to have come to some firmer ground here:

“Considering death had meant considering life. I knew that now, I had made a firm decision towards life, not for length of time, that wasn’t the point, but to find fresh ways of liberating its quality. Instinctively that seemed to mean going back to base. Considering roots; the depths of things.” The journey seemed to provide her with the understanding for this insight; “it had seemed clear, that I had for some time, been voting myself out of life. I had been diving for the dark.” I must say that it might be the same for me; that I have dived toward the dark. But then, on better days I don’t feel such despair and want to find a way of getting as much as I can from what I have left.

I was much more interested in her philosophical thoughts than the places that she visited. However, my interest was piqued by the pilgrim stop in Les Saintes-Maries-de-la-mer. This site is associated with Saint Giles who is particularly associated with the relief of mental disorders and cancer. Could he help me I wonder?

Jini Fiennes spends a lot of time writing about the places that she visited in extreme detail and this may have been due to the publisher’s demands, but for me, and I think for the author too, the inner journey was the jewel in the crown. “Perhaps the interior way is the one that counts in the end. No journey can be more dark and difficult, unexpected and hazardous than that. There is always somewhere this deep, searching sense, that you are in some respects, unlike anyone else and in this, there is a very particular purpose.” What wonderful prose. I have always been a reflective thinker and now faced with my mortality my thinking has become problematic. Once it becomes quiet, especially when it is time to sleep the void becomes apparent and the inner journey can vary between being fraught with fear and panic and an acceptance of what will be. Jini was aware of these moments; “In everyday emptiness and ordinary waiting, you are suddenly back simply with yourself, which feels to be nothing more than a pool; some empty space that fills and empties, is calm or angry, dark or light, grasping and clawing, or quiet, almost stable and content.”

Finally; “How easily resolve and purpose diminish into the soft trash of self absorption; the stupid illusion that one’s minimal hardship has some kind of relevance. How you decide to look at a situation will dictate how you feel towards it. You are still in command if you choose. There is always choice.”

So Jeni Fiennes does have a truth of sorts. Can I take any comfort from this? Is it really possible to look at my situation differently?

As the name of my blog suggests I am a coward. It’s not something I’m proud of but I am not going to pretend to be something that I am not. I truly admire all the warriors out there who are fighting their battles with cancer, coping with the trauma of their disease and the treatments that have to be endured. For me, it is all just too difficult, too challenging, and too painful. I am not a gracious citizen of the kingdom of the sick. I am bowed under by the weight of it all and struggle to exit the pity party that I inhabit for myself. My time is, in the main, consumed by the effects of either my cancer or of the treatments. Each effect creates a mini death for me to endure.

Since my last blog everything seems to have taken a downhill turn. The surgery on my lung was excruciatingly painful. The hospital stay lasted 11 days (3 days with two drains attached and 11 days with one drain). Morphine, anti-sickness drugs and various other medications clouded my brain and the institutionalised nature of the hospital began to wear me down. I received mixed messages about the success of the surgery, with a trial diet introduced only to be withdrawn suddenly after three days when I was sent home. I know that the surgeons are hugely talented individuals and are masters of the scalpel, or in my case keyhole surgery, and for that I am grateful, but they can sometimes be somewhat dismissive of the human elements of what they do. The surgical team were expert in thoracic surgery and were interested in my lung. They are not very familiar with Non-Hodgkin Lymphoma and its complications. This creates a rather fragmented approach. OK, if things go to plan, not so OK if complications set in, like they did with me. Equally some of the nurses and auxiliary staff were amazing, their competence, compassion and professionalism cocooning me in a comforting sense of care. However, some staff were less interested in the patients and this created a nervous sense of unease.

But, that is in the past. I had some very tearful bouts whilst hospitalised and had many restless nights tossing and turning with images of dying in a hospital bed flooding my drug addled brain. When I die I would prefer not to be in a hospital. Is this possible?

The day before yesterday the stitches came out. Like the remnants of a fishing trip – black knotted, spiteful twine. No embroidery or stitch technique with these surgeons. I imagine the reason for their robustness was due to having to hold drains in place. The nurse who removed them said she had never experienced such knots. Thankfully, she was patient and gentle. They were removed in time for my postponed chemotherapy which took place yesterday. And, yesterday was an absolute disaster. The Rituximab, after five hours caused the worst allergic reaction I have ever had. Just when I thought it had been sorted by previous tweaks with steroids, anti-inflammatory stomach drugs and anti-histamine, it all went pear shaped again. It was a gruelling experience and the doctors who were called after the second and more serious bout of hives stood waiting for the response to calm down. It all happened in the chemo lounge where there is no privacy and where events like these create an unwitting centre of attention. My face and torso was an absolute mess. It calmed after about 20 minutes following the injection of more steroids and I was sent home after a couple more hours. This chemotherapy session cancelled along with the one planned for today. I now have to wait to be contacted. I suspect I will be called in to see the consultant as I did not give consent for more aggressive chemotherapy.

This is now what consumes my thoughts. What do I want to do with regard to treatment? Of course, I do not want to die but I am less afraid of dying than of being in pain and out of control. I’d like to have a shorter time span to spend in relative good health rather than a longer time span spent in hospitals or feeling like shit at home. Already my appearance has changed drastically. My face has become very drawn and my eyes have sunk. I look like a cancer patient. My hair has thinned and I lose quite a lot when I wash it but I am not bald. My hair is very important to me; it always has been my crowning glory. It is my last cowardly defence against this disease that wants to take so much from me. It may sound vain but there it is.

I need to make a decision about my future treatment but my consultant only seems to want to offer more aggressive chemotherapy. What happens if I choose otherwise? Will I be abandoned? What are my options? How long might I have? What about end of life care? Who can a coward turn to?

Yesterday (Tuesday) I visited the hospital for my surgery pre assessment. I am booked for surgery tomorrow, Thursday 11th May to have the fluid drained from my left lung and then the lung sealed. I could not have asked for a better service. However, I’m a coward and I am working hard to psyche myself up for the whole procedure. I’m not helped by the outcome of the meeting that I had the day before, (Monday) with the lead consultant of my haematology team. He informed me that my tumours had not reduced enough in the three cycles thus far so I will need to be put on a more aggressive chemotherapy. Instead of R-Bendamustine I will have R-CVP. This will incur more severe after-effects and include hair loss. I have not consented. Firstly, I have not had three full cycles due to allergic reactions and complications and secondly I have lost confidence in chemotherapy for stage IV incurable NHL. I am currently consumed by doubt and fear, but the concerns with regards to chemotherapy must be contained whilst I face the procedure to drain my lung. The fluid build up is a symptom of my cancer.

It was the problems with my breathing that led to the discovery of Non-Hodgkin Lymphoma. I had started finding myself breathless following a virus I had contracted. After presenting at A&E thinking I might have lung cancer it didn’t take long to be transferred from Respiratory to Haematology. However, since the beginning of it all the respiratory doctors have constantly urged me to have surgery to seal the lining of the lung to prevent the constant build up of fluid. This procedure has been prevented by the consultant haematologist who believed that the chemotherapy would reduce the tumours and the lung would right itself, negating the need for surgery. I never felt the respiratory team shared this belief but as a coward I was more than happy to go along with non-action. However, not having this treatment has led me to have four aspirations (a relatively quick outpatients process which drains up to a litre and a half of fluid under local anaesthetic) and a full drain (four litres of fluid) when admitted to hospital with a lung infection following my first chemotherapy. I was not prepared for the full drain. It was excruciatingly painful. Tortuous.

Each aspiration has taken more time for me to recover and following my last one which was two weeks ago, I am feeling pleased that the respiratory team pursued their avenue of treatment and put pressure on the haematology team. However, the procedure which is done by keyhole surgery demands a full drain in order for the sealing to work. AAAAgh!!!! My memory of the last drain is still very clear and the thought of undergoing all that pain again fills me with dread. I did explain my anxiety to both the consultant and nurses involved with the surgery and they have assured me that they understand the pain and have every confidence that it can be controlled. I hope so.

Following my surgery there seems to be another difference of medical opinion between respiratory and haematology expertise with regard to my recovery. My haematology consultant wanted me to commence with my third chemotherapy cycle next week, just days after surgery. My husband advocated that this was too soon and so it was delayed by a further week. However, in discussion with the staff at the hospital where I am having surgery it is clear that they believe I need more time to recover before chemotherapy. What is best?

I have to arrive for surgery at seven tomorrow morning. Worry, worry, worry! At least there won’t be much traffic at this time and hopefully easier to find a parking space (the hospital is in the west end of London). After surgery I will have two tubes coming out of my lung which will remain for two days. Worry, worry, worry! – this is when the pain really kicks in. I will then have physiotherapy worry, worry, worry, and be observed for four days and if all is well discharged. I have a selection of books to take with me and have downloaded the complete series 6 of Downton Abbey. I’m assuming I will survive surgery and will be fit and able enough to read books and watch TV. That’s me thinking positively!

Added to this, today is my 9th wedding anniversary. What can I say? This is where it really hurts. My husband’s card to me was perfect and says it all. Like all couples we never planned for anything like this. We try so hard to act ‘normally’ but it’s difficult. Sometimes the tears just have to roll.

I have always been bookish; a seemingly insatiable desire to read along with an eclectic curiosity has led to what I have always considered to be a healthy attraction to book acquisition. I like to read books, to own books and to be amongst books; libraries and book stores always entice me. I have always got a small pile of unread new books at the ready and have bookshelves overflowing with books that I would like to revisit. As a way of remembering what I have read I like to make handwritten notes that I can refer back to. I think this is almost ingrained as habit for me: I made loads of notes when I was studying and later, my work as an academic meant that I needed to make notes with regard to either my research or my teaching. Therefore, the making of notes from books that I read for personal interest and pleasure is an extension of this.

However, just recently I hit a bump in the road, the bump being my diagnosis of incurable cancer. All of a sudden it all seemed so pointless. Firstly, chemotherapy made it difficult to concentrate long enough to even finish one page, so for the first few days after treatment I opted for the TV box set. Too weak to do much else but become square eyed and practically comatose. I had not previously realised the energy required for what appeared to be the simple task of reading. The books at my bedside seemed an insurmountably high and redundant pile reminding me of my new status as a cancer patient. Secondly, writing my notes up (which had always been an enjoyable aspect) began to seem a futile endeavour – they are only for my benefit and will be thrown away when I die – which might not be a long time off! So, is it not an utter waste of time? Thirdly, I have become aware of the limitless amount of books that I want to read and the limited time that I have. Should I start buying my books one at a time rather than in multiples of three or four? Should I start emptying my bookshelves as I’m unlikely to be able to revisit them all again? Should I throw all my notes away? Should I give up on reading altogether? Honestly, what is the point of my reading with the uncertainty of illness and death hanging over me like Damocles’ sword?

This is why a cancer diagnosis is so life shattering. It’s not just the big things that you have to deal with such as the trajectory of the disease on your body and the risks of the treatment, it’s handling the small, rather mundane things that fill a life that were always previously taken for granted but which now take on greater significance. Why was it possible for me to read unquestionably just for the sheer pleasure of it before I was diagnosed with cancer? Why did I never previously question the purpose of it? Why does it need to have a purpose now just because I have incurable cancer?

Well, I think I may have come some way in settling my dilemmas and I’m pleased to note that it does not involve getting rid of any of my books or stopping my note taking. Instead it has demanded that I understand myself a little better and recognise the values that I hold. Historically, it was the Renaissance when, as Lisa Jardine states; “the printed book revolutionised the transmission of knowledge and permanently changed the attitudes of thinking Europe. Print brought with it many of the features of a book-based culture which in our everyday lives we now take entirely for granted”. I was born embedded into this culture and its influence is clearly visible in my lifestyle. For me, a quality life would have to include the opportunity to read about subjects that interest me. I had never realised how important this activity was for me. Equally, as Jardine points out, during the Renaissance the book became treasured both as an art object and as treasured text. They were “curiously intertwined”. Therefore, wanting to see my bookshelves and the rows of book spines that furnish them has a deep aesthetic value for me. I now realise that my reading habits do not need a purpose because, quite simply it is a lifestyle choice that I make, even if that life may be coming to its end. It’s what I do. And it might just be the perfect response to the circumstances that I find myself in. Jules Renard, the French writer quoted by Julian Barnes in his book ‘Nothing to be frightened of’ said; “It is when faced with death that we turn our most bookish”.

So, why not continue to buy books in multiples of three or four? Why not swap for the box set after I’ve had chemotherapy? As for the making of notes, I shall continue with this activity too and consider it my ‘hobby’. Realising that I may not have much of a future the activity becomes in a way more significant as a hobby. I have found the point of it after all. The point is – enjoyment. Selecting books, holding them, owning them and reading them along with making notes are all for me part of a creative pursuit that’s pleasurable, intrinsically rewarding and allows a sense of accomplishment. With or without cancer.

I’m feeling very anxious. Tomorrow I have an appointment at the hospital to undergo a CT scan to establish if my tumours have reduced. I have been on Rituximab and Bendamustine for three of six cycles but it has not been plain sailing. I have had severe allergic reactions to the Rituximab (a cancer drug known as a monoclonal antibody) which halted the first cycle and caused problems for the second. It was only the last one, two weeks ago, that was delivered fully, according to plan. Thanks to much tweaking of the pre-meds and additional steroids. So will this be enough to show progress? If no reduction observed, will I have to be put on a more aggressive chemotherapy? So far I have been fortunate with the side effects; the sickness is controlled by drugs, I haven’t lost my appetite and although my hair has stopped growing and is thinning I have not lost it. I look dreadful with sunken eyes and cheeks(I’m not sure why) but this can be forgotten if I avoid looking in the mirror as much as possible.

The best outcome of the scan will be that there has been a significant enough reduction in the tumours in order to continue with the chemo programme. The worst outcome is that there has been little or no reduction and the treatment will have to be altered. I dread what this might entail.

I think I have found the uncertainty of everything to do with cancer one of the most challenging psychological aspects. There is no certainty with my diagnosis or prognosis. There are over sixty classifications of Non Hodgkin Lymphoma. It can be either slow growing and incurable or fast growing and aggressive but curable for some. I have slow growing but this is never certain because they can become fast growing at any point in the future. So I live with the uncertainty of the behaviour of the cancer, the uncertainty of treatment (I hadn’t realised how hit and miss this was) and the uncertainty of how long I will live. And should things get bad I have no idea how I might die or how long it might take.

So, although the CT scan itself is not an onerous procedure, its outcome has huge significance. A significance that disrupts my sleep and troubles my cowardly responses to treatment.